Death of a loved one and Autism

It's been awhile since I have written and it's because I have been fighting with myself to go on with my blog.
My Mom was my biggest reader, fan, and all around supporter of all things therapy and Autism related. She was dx with adneocarcinoma stage 2 then days later progressed to noncurable stage 4. This was a very hard time for me and my family. It seems like a blur now, within 90 days we went from planning the holidays to planning her celebration of life. All the while I was both doing my best to keep up with the autism mom schedule, my regular mom stuff, life in general, and being the absolute best caretaker with my sisters and brother for my mom. The day after Christmas she was placed on hospice care and we had some amazing moments, sad ones, angry ones, and some laugh your booty off memories! I was so reluctant to bring jojo to see her (we were blessed to have her in her own home through hospice) during those last weeks,  I was so focused on keeping her comfy and happy I was afraid he would be too loud or rambunctious. But I remembered how much she always tried to include Jojo in everything, so i just did it. And one of my favorite pictures is my sweet mom eating Popsicles with the kiddos. Sure he was loud, and acted like he always does but it was perfect that day. They all got a good laugh with grammy, cherished memories!

My beautiful, always loving, caring, and perfectly ours Mother passed away beautifully with all her kids around her on 01/23/15. It was too fast, and left me feeling pretty down.
I never really thought Jojo noticed what was going on. He seemed quite oblivious to it all. I chalked up his new behaviors to me being gone a lot to care for my mom.  Well, the evening after She passed, Jojo ran back n forth between his bed and my moms picture! He knew, he felt it, it hurt him just like the rest of us. I knew from that day on that he was going through the grieving process like the rest of us. Even now 2 months later I catch him with her pictures and looking at videos with her. He has such genuine feelings and loves his people, and that would be anyone who loves him back. He loved to listen to my mom every night at 8pm, she would tell him goodnight just to hear him squeak at her or a random buh bye.
I miss her with all my being, a piece of me left that day but I believe families are forever so I can go on, each day will get better. And I will continue to blog as she would have wanted me to. Plus it's an amazing outlet for me and if I can help just one person it's worth it!
Moral of this blog: children with autism do feel, they have feelings tenfold. The old  thinking that autism will rob them of emotions is not true, in our case we pushed through the "boy in the window phase" and with hard work and follow through I believe in my heart that most can learn to understand emotions. I will update our "emotions" work on the next blog. Our awesome speech therapist made us a book that helped.

Jojo all smiles, a new found happy!

Genetics and more!

   We finally had our long awaited genetic appointment on 1/28/14.  I took me this long to write about it because its just hard.  Its hard to deal with all the what if's and the unknown that having a chromosome abnormality brings.  The genetic team was pretty darn amazing with how they handled Jojo and his sensory processing.  He gets very agitated and overwhelmed in new places and especially with 4 doctors all around in an exam room. The whole appointment lasted about 2.5 hours and he managed to not have any huge meltdowns.  They examined every inch of my kid.  They noticed the littlest things, like tiny birthmarks, the position of his ear vs eyes, they way he looks when he is just chilling to how he breathes in a resting state.  After all was talked about and looked at we were told that because his deletion (chromosome 6..specifically 6p22.3) is so rare they don't have much to offer in way of advice or what to expect.  She did noticed that Jojo takes some deep breathes for no apparent reason and so that will be looked at during an upcoming 24hr observation.  He will also have an EEG while there and a sleep study to see why he is waking at the same time every night and and to see if there is a correlation between the laughing spells and his waking.  They also did further chromosome testing, specifically looking at chromo 15.  They told us some of Jojos symptoms are characteristic of Angelmans syndrome.  While im very thankful to have the opportunity to see a genetics dr and try to get answers I have to say, ignorance is bliss! I was just getting used to autism with a side of chromo 6.

 I tend to obsess over what they suggest is going on and the reality of the fact that he has so many hurdles to cross.  As he gets older the developmental gap is getting bigger.  Its not so easy to pretend that he is just a lil slower than his peers.  Its heart wrenching to see what he "should" be doing or to hear that at 3.5 yrs old he is still at a 14mo cognitive level.  I usually go through this weird down in the dumps kinda mode for about a week after an appointment.  I spend that week researching every new term I heard and trying to think of new ways to approach learning specific to Jojos needs.  Then I snap out of it and realize that he is making such great progress, in his own timing. He really has had an amazing few weeks with lots of new sounds and babbling.   We hear words but consistent use of the few words he has is just not there yet. 

 We have an exciting new opportunity that we heard about through the chromosome 6 group we belong to, It's called IRUN4, a nonprofit organization that matches up runners with a child or adult with a disability.  I was so thrilled that we got a match the same day we signed Jojo up.  He has a huge Love and desire to run.  He stared running before he even walked..no seriously!  He went from a funky crawl to just running. He wouldn't stop and it was one of the first things he did that was just a lil different than our older kiddos. He ended up getting so into it that he would run till his heart would beat so hard and fast he would get winded. We had to stop him. So now we go outside and have to restrain him from running because he will just run and not stop..But now he has a runner.  She is pretty amazing too with a great story. We adore her already and Jojo loves seeing her posts and pics. To get more info: www.Irunformichael.org

   Jojo has two super cool new signs and it's been 2 weeks so I consider them here to stay.  He signs EAT and will get so excited when he gets food be a use he ASKED for it!  He also signs I potty and is doing pretty well with the first stages of potty training.  I am just amazed by his drive to learn and his ability to overcome hurdles one by one. 

Hand in hand, all together.  We got this!
#TeamJoJo